pixiegirl

yes it does help some but I'm still amazed that I don't have any damage after so many years of symptoms (and the runs for 8 years). I'm gluten-free and plan to stay that way.

Susan

I see people are reading this but not replying... I'll be more specific... do i have the 2 main celiac genes? Also since the rest of my values are normal or even low normal... well how could that be, I've had symptoms for at least 8-10 years?

Thanks, Susan

I'm a total newbie here and new to gluten-free as well so I probably shouldn't be answering this, but if you have celiac its not an allergy so that information wouldn't apply, however if you only have a wheat allergy then perhaps it might apply to your situation.

susan

Ok I got my results from EnteroLab and I'm not sure what they mean... I guess I have two genes for the disease?

Gluten Sensitivity Stool Test

Fecal Antigliadin IgA 14 Units (Normal <10 Units*)

Stool Test for Autoimmune Reaction to Tissue Transglutaminase

Fecal Antitissue Transglutaminase IgA 6 Units (Normal <10 Units)

Stool Test for Small Intestinal Malabsorption

Microscopic Fecal Fat Score: 58 Units (Normal < 300 Units)

Stool Test for Milk Sensitivity

Fecal anti-casein IgA antibody 6 Units (Negative <10 Units)

Gene Test for Gluten Sensitivity

Molecular analysis: HLA-DQB1*0201, 0201

Serologic equivalent: HLA-DQ 2,2

Interpretation: Analysis of this stool sample indicates you have dietary

gluten sensitivity but levels of intestinal IgA antibodies to the human

enzyme, tissue transglutaminase, and the milk protein, casein, were below

the upper limit of normal and there was no malabsorption of dietary fat.

HLA gene analysis reveals that you have two copies of the main gene that

predisposes to gluten sensitivity and celiac sprue (HLA-DQ2). This genotype

also can predispose to microscopic colitis and other autoimmune syndromes.

Two copies of these genes are an even stronger predisposition than having

one gene and the resultant immunologic gluten sensitivity and disease may

be more severe. Furthermore, having two copies of the gene means that each

of your parents, and all of your children (if you have them) will possess

at least one copy of the gene as well.

For optimal health and prevention of small intestinal damage, osteoporosis,

damage to other tissues (like nerves, joints, pancreas, skin, liver, among

others), and malnutrition, recommend a strict gluten free diet and

re-testing in one year to insure this reaction is lessening. If you are

experiencing any symptoms, these may resolve following a gluten free diet.

As gluten sensitivity is a genetic syndrome, you may want to have your

relatives screened as well.

Thanks, Susan

Hmmm I'll have to try Amy's I like their other products. I was in Whole Foods Market yesterday and they didn't have Amy's crusts... they had finished pizza by Amy but it was gluten-free. I'll have to keep looking... do you order it or buy it in your local store?

Susan

Well I've only been gluten-free for about 2 months and I love pizza so last night I tried to make the crust with the Gluten Free Pantry mix, it was awful, I threw it out. It was like a big sponge with pizza stuff on it. Totally Gross, I'll try some of the other options but I actually got more of a "fix" when I used corn tortilla's and made pizza quesdilla.

Susan

Yes I'm sure thats what happened at Wendy's, that it got contaminated at some point. I had asked the "manager" (about 19 years old) there about gluten free and he was lost, had no idea what gluten free was and was not helpful. Oh well, sometimes its what you have to do.... next time I will do their baked potato but I did notice that they serve it with margerine and/or sour cream, so I'm not sure it that stuff is gluten-free. I've never used margerine, yuck.

Susan

Oh I'm so jealous, wow, how exciting. I'd love to have that in our store in MA, we are not that far away I wonder why they don't ship up here.

Susan

Well I'm about 8 weeks trying to gluten-free and I was doing well until Thanksgiving, but I think, generally.... I have a good idea of what is what. I'd say if it wasn't for reading this list every day I'd still be so far in the dark.... I've really gotten a good handle on how wide spread gluten is from all the posts here.

I've also come to realize that people who have been gluten-free for years sometimes can get glutened accidently. So I'm just going to do the best I can. I've copied all those big lists and am making a sort of Master list for myself.

Susan

When i was traveling to Florida for thanksgiving I ate Wendy's chili and I got totally sick about a half hour after. It was all I had so I felt sure there was gluten in it.

Susan

Can I eat them, the ingredients are:

sugar, oil of peppermint, gum arabic, gelatin, corn syrup

I looked on their web site and they don't really say. Also does anyone know of any other mints that might be gluten-free, like tic tac's or anything.

Thanks, Susan

Wow, I'm glad I started this thread, its really made me feel better to know that its just not my darn family. I'm actually considering next year to fly into my brother's house the day after thanksgiving... everyone stays for a few days after and that way I can eat good food and still see everyone.

Since Thanksgiving I've spoken to my mom and sister in law about the holiday... my sister in law says don't be mad at everyone, life is too short, and I agree, I'm not mad I was just disappointed. My mom..... sigh.... well she listened to what I had to say and agreed with me and said she is still learning about Celiac and will be more intuned to my diet issues without nasty comments, which of course was good. But then she said maybe you shouldn't be so sensitive.... well I was sick for 5 days, it tends to make you a bit sensitive! Oh well. We'll see how it goes.

Thanks again, Susan

Thanks for all the info, it was hard enough going gluten-free, I hate the idea of soy, milk, cabbage, yeast.. on and on, but i'm slowly going to eliminate stuff I guess. I had a McCormack spice mix last night on my chicken (Montreal chicken seasoning, I think) and I got really sick last night, the ingredient list looked ok to me but... every thing else I had was totally gluten-free (chicken, broccoli, baked potato) so it had to be the spice. Sigh.

Susan

I'm on the East Coast and our Whole Foods knows about the bakery but at this point our store isn't on the short list for getting any of the products. bummer.

susan

Oh it was me that said that and I was at the Legal at Copley Place too just a week ago and I spoke to the manager too. They are very careful about it and they have such good food, I had a great meal, I'm glad you did too!

Susan

Thanks again everyone!! You all made me feel better, I don't know how we all survived before the internet.

There were times where my family was a bit rude but I think some of it (not all for sure) was just due to the fact they have never even heard of Celiac before, I guess it all takes some getting use too. But I have told my mom that I'm thinking of doing Thanksgiving at home next year.

Eating other meals at my brothers house won't be as difficult, he is a fabulous chef but at home they often eat very simply, grilled fish, veggies and rice... I will say the nicest person was my brothers girlfriend (of 7 years, girlfriend sounds so insignificant) she was very careful with the other meals and told me all the ingredients of their marinades and such, so that was very nice.

Thanksgiving is such a gluten heavy meal.... Oh well, thanks for your support!!

Susan

Thanks everyone for all the replies... Laura if you want to complain I'll be happy to listen, I'm feeling the same way about my family right now, sigh. I'm actually thinking of skipping Thanksgiving next year and doing it here with my daughter.... because in truth if I would have stuck to my guns I'd not have been able to eat virtually anything.

Eating in my family is.... well its how we socialize, it always has been, I know most of your families are probably the same but mine takes it to a different level for sure. Other then Turkey day we ate out every single evening (leftovers were for lunch) and as you all know its hard in restaurants.... no one in my family would even consider going to Outback or PF Changs, I'd guess they have never been in one and they wouldn't go. All meals are eaten in small very nice, very expensive restaurants (however I honestly felt more concern about my condition in the restaurants then at my brothers house), with wine flowing, appitizers, bread, many courses, dessert, coffee, after dinner liquores... food is what we do... we have a number of food reviewers (journalists) in the family.... anyhow, in truth I just don't fit in like I use too.

Any how thanks for the kind words... I can't wait for my symptoms to go away!

Susan

Well, every year I go to thanksgiving at my brother's house. I've only been gluten-free for 6 weeks, well now I'm back to square one. Sigh, its depressing, I was in Florida for 5 days and the nights we ate out I did better then eating at my brothers house.

I know everyone, including myself, is new with this, but I really felt a few times like it was just too much bother for everyone to watch out for me. They would stir a pot with "gluten something or other" in it and then stir my gluten free food. The turkey was stuffed and on Thanksgiving I ate meat from the outside of the bird but after that they tossed it all into one big tupperware thing and there was stuffing that was stuck on some of the turkey mixed in, so I could eat turkey after that.

Everyone kept telling me, "oh its just this one time" or "it can't hurt you on just one trip"... blah blah blah. No matter how many times I told them it never sunk in. At one point, again this is new to me so I was asked a lot of questions about being Celiac... and I told them 1 in about every 133 people have some sort of wheat/gluten intolerance and everyone at the table came down on me. No way, I'm wrong, they have never heard of it. Twice I was told I was a pain in the ass (by the same person). I got the distinct feeling they all thought I was making it up. Most of my life I've been very healthy and yet I was called a hypocondriac a few times. I never get sick, I never read about something and then "get it" I've never been close to being a hypocondriac!! I was really hurt and I'm not that easily offended.

And of course along with all this I've got the runs back and all my stomach problems, I know I was glutened every single day to various degrees. I'm home now and so so glad. Its my family so I'll give them another chance but it won't be for a while, this was waaaaay to much for me to handle.

Sorry for the whine....

Susan

I'm in Stuart, Florida right now (just north of Palm Beach) and although there isn't a Whole Foods or Wild Oats near by I was surprised that the local Publix and Winn Dixie both had health food sections with gluten-free pastas, cereals, cookies and such, so I'm doing ok here.

Susan

Yes I'd like the text of the restaurant cards too, I'm new to this and really need the help eating out!

Thanks!

Susan

I've been gluten-free now for oh.... about 6 weeks and even after this short time, I would not go back to eating gluten, I feel so much better. I don't have a real diagnoses either, my original doctor hinted that it was in my head or IBS. I just changed doctors because of his attitude and my new doctor is sending me to a GI specialist and when I told her my blood tests were negative but that I'm feeling wonderful on a gluten-free diet, she said, well then its plain to see there is some sort of gluten sensitivity going on. I did my EnteroLab test last week and she is very anxious to see the results.

One thing that really surprises me... and I know we all have to make our own decisions in life... but that people will have symptoms and not try gluten-free. To me that is unreal, I don't mean to offend anyone but its just gluten its not.... well its just food for a couple of weeks.

My mom has all the symptoms that I have and she too has had them for years. I've asked her many times why she doesn't go gluten-free for a few weeks... she tells me she can't "live without bread". Ok I know thats her decision but its just so silly to me, because she can live without it! I made her some gluten-free bread and spice cake and she was not interested, its not sourdough she said... I agree, its not. So instead every single day I have to listen to her complain about her digestive problems, I deserve combat pay I swear!!

Oh well vent is over but I have always been very interested in a healthy life and its hard for me to understand that people would put their health at serious risk for a piece of bread. I don't even need a diagnoses... I know gluten doesn't do well with me.

Susan

Thanks for that info, I didn't watch the show but my daughter did. I sent the e-mail letters to Fox. I was diagnosed with CFS when my daughter was born 13 years ago. I was very lucky to be able to have as my doctor Dr. David Bell, who really was the very first to recognize that people in his local town were all ill with the same thing. He went on to be at Harvard where I saw him, he's written tons of books on CFS and back then was considered the only real expert on the disease. (I don't keep up much on the research now)

For those of you that have CFS or fibromyalgia, Dr. Bell did tell me this, that most patients show much improvment after a period of time. For me it was 5 years, I was so sick some days and so tired I couldn't get out of bed, but after the 5 year point I slowly began to see improvement. I also did something that I felt was impossible when Dr. Bell told me to keep this in my daily routine.... exercise, even if all you can get is a short walk. I was able to increase my distance (I still walk daily now) and slowly things got better.

I know this isn't the case with everyone but if you have CFS really badly, just have hope because most people do show good improvement (and we learn how to cope). Now 13 years later, in my every day life I'm back to normal, I have less stamina then most people but that isn't really evident unless we go to disney world or some place that requires a lot of walking. On a day to day basis I'm doing really good.

Anyhow thanks for the heads up about Fox.

Susan

This is so my experience not only with store bough gluten-free breads but I've been making bread with various mixes and every single time, they come out of the oven light and tasting good and the next day well its awful.

I made gluten-free Pantry bread last weekend with a recipe I was told to divide the dough in half and ball it up and cook two small loves in a cake pan. well it spread out so it was shaped like a cake but out of the oven it was great (i put parmasen cheese and herbs in it).

the next day the other cake dish loaf was so hard we took it out in the yard and used it as a discus. It was like a rock, the darn dog wouldn't even eat it. I don't know whats up with that but I too only get one day with the bread.

Susan

I can relate to your story, mine is the same, exactly. I was told 5 weeks ago that I'm fine with a touch of IBS. BS for sure!

I have been Gluten free for 5 weeks and I stopped the bathroom dashes completely, I feel so much better. Just yesterday I sent in the EnteroLab stuff so I'll see what comes back there. But in my book I just feel so much better now that I'm gluten-free. Its been a huge change.

Its hard to give all gluten products up and it would be awful to do if you didn't have to but if you go gluten-free and feel a lot better, then I think that tells you something really important.

Keep in mind doctors don't know everything, they simply help us with our health decisions.

Susan

Wow that is so funny, I'm drinking their True Blueberry tea right now!! I love the stuff!

Susan